Why cancer screening is not a black or white decision

Last month I saw a 65 year-old woman with a mass in her kidney in clinic for follow up. She had recently transferred her medical care to our clinic after her insurance changed.

She came with a few medical problems including high blood pressure, tobacco use and arthritis — diseases which are the bread and butter of primary care medicine — but she also came with a history of a mass in her right kidney. It is not clear how the mass was first detected — she never had symptoms from it. Our best guess that it was found incidentally on a CT scan done for other reasons. But once found her doctors couldn’t ignore it. At the same time they were at a loss for what to do with it.

As her new doctors we certainly did not know what to do either. So at her first visit two months ago we decided to image the mass again, this time using MRI, and then sent her to a kidney specialist. The MRI confirmed the mass, a 3.5cm by 2 cm solid structure sitting quietly in the upper pole of her right kidney. Despite repeated attempts to contact her previous doctors, we could not obtain her prior records. We had no idea how long the mass had been there or how large it had previously been.

At this visit, we reviewed the consultation letter from the kidney specialist we referred her to. In it, he wrote that there was 30 percent chance that the mass was benign, meaning not cancer or not malignant. That left a 70 percent chance that the mass was cancer. The only way to get a definitive answer would be to examine the mass under the microscope. The problem is that this would require undergoing surgery to remove the mass. However, the specialist also wrote that ”…most likely this mass, if cancerous, would be slow-growing” and that it was unclear that such a cancer would “ever cause significant morbidity.” The specialist’s recommendation was to follow the mass with repeat MRIs every 6 months to follow its size. If the mass grew significantly, a partial or total kidney removal could be performed. However, if the patient elected to have surgery now, this too would be “reasonable.” In short, we would watch and wait.

To people outside of medicine, this proposition may sound absurd. “You mean to tell me that there is a 70 percent this thing is cancer and you’re not going to cut it out!” The popular media has conditioned us to have a visceral and often knee-jerk response to the word “cancer” — all cancer is bad, and all cancer must be aggressively treated. The truth is somewhat grayer than that. Yes, generally speaking, cancer is not good. But at the same time, not all cancer is harmful. There is a spectrum of cancers, which vary in their aggressiveness. Non-melanoma skin cancers (e.g. basal cell carcinomas), for example, while common rarely metastatize. Autopsies of people who die from cardiovascular disease or “old age” frequently show evidence of cancer. In fact, by age 80, 80 percent of men have prostate cancer but most will die of causes other than their prostate cancer.

With these issues in mind, I went to see the patient. In the end, it would be her decision about how to proceed and so I laid out the facts as best I could. She had two options: 1) get the surgery now and risk the chance that she might have part or all of her kidney removed for a mass that would have never caused her any problems, or 2) watch and wait and risk the chance that the mass was cancerous and would continue to grow or worse spread to other parts of the body. With Option 1, she would get a definitive answer and her fears would be laid to rest. At the same time, she risked major surgery, which for someone her age could be significant, not to mention losing part or all of her kidney. With Option 2, she would have to get serial MRIs every 6 months and constantly face uncertainty about the unknown mass occupying her kidney. At the same time, she avoided having surgery for what would likely be something that would never cause her any harm.

Often we think of screening for cancers and other diseases too simply. Our knee-jerk assumption is that if screening leads to diagnosis then the screening test is worthwhile. Thus people readily advocate screening women for breast cancer with monthly self-exams, screening men for prostate cancer with PSA blood tests, and screening people at risk for cardiovascular disease with cardiac stress tests. However, things are not always so straightforward. In deciding whether a screening test is worthwhile we have to think at least one step ahead to what we would do with the results. This allows us to answer the crucial question, would screening this person with this test lead to better health? For the case above, on first glance it would be natural to think, “Thank goodness that mass in her kidney got caught.” Some people may even think to themselves that maybe they too should have a CT scan done of their kidneys, in case they also have a kidney mass. But the truth is that CT scan that found the mass in my patient’s kidney has probably not made her life any better. In fact her life is probably worse off because of the anxiety, medical tests, and health care costs it has brought.

There is little we can do to avoid situations like the one faced by my patient. For other medical reasons, she may have needed the CT scan that found the mass, and once found we cannot ethically ignore it. However, we can avoid similar and more common situations like hers that stem from over-screening. The need to think at least one step ahead, to balance risks and benefits, and to keep improvement of health as the overaching aim is critical when making decisions about screening — what diseases should be screened for, who should get screened, and how often screening should be done. After all, medicine is only useful inasmuch as it improves health.

After our discussion my patient was uncertain about how to move forward. In the end, she choose option 2, the “watch and wait” approach, but it was clear that the decision still weighed on her mind. “It would have been just as well if they never found this thing,” she said.

Shantanu Nundy is an internal medicine physician who blogs at BeyondApples.org.

Why cancer screening is not a black or white decision 13 comments

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Always better to have more information

She has a right to know. Ignorance is not bliss, it’s ignorance. The truth is better. It is better to know. She isn’t “worse off”: it is what it is.

My father died of kidney cancer. A fortuitous screen is the only chance he would have had of avoiding what happened to him.

This paternalistic attitude that patient’s must be spared “worry” must stop. We all have a right to make the best choice in our individual circumstances with the best information available.

You want her to be spared “worry”? Then figure out a way to make an accurate prognosis without surgery.

Until that’s possible , I have to say, I’d rather worry about what’s real than walk around unaware of a condition that SHOULD make me worry, for which I should make hard choices. I want to know if there is an increased chance of fatal disease even if I don’t take any steps to stop it. Maybe I don’t want surgery because I don’t want to be sick in bed or face that risk – I’d rather gamble. But even then, Will I get my will and other affairs in order? Will I take that trip? Will I spend more time with my grandchildren? My whole way of looking at the world changes. Time is used the way I want to use it and I will use it more effectively if I have some clear knock on the head message that it may be shorter than I thought.

Or, I can say, it’s worth it to me to lose half my kidney to gain the best chance of surviving the worst possibility, even if there is a fair chance the worst won’t happen. I’d make my choice on an individual basis, based on what I care about.

How dare anyone try to “spare me” my own life.

http://www.insweb.com/home-insurance/home-insurance.html Robert

Nothing’s black or white when it comes to someone making a decision as crucial as this.

alex

The quote was from her, dude. Maybe you should condemn her for wishing they hadn’t found it.

News flash: Patients have different priorities. People who think that every patient needs to be constantly pursuing their own care and reading up on stuff and thinking about their health are as bad as people who think that every patient should be totally uninvolved. It’s NONE OF YOUR BUSINESS how people want to handle their own health care. If you want to get a CT scan every month to look for the tiniest incidentaloma, that’s between you (and your insurer).

Doc99

CT-directed fine needle aspiration anyone?

BD

She can always change her mind and have surgery. That’s the advantage of watch-and-wait.

It sounds like her physician did a good job of explaining pros and cons. Surgery is not risk free. Atul Gawande once interviewed a surgeon who lost control of bleeding during removal of a tumor that turned out to be benign; the surgeon said “it was a clean kill”.

Oliver

Make that “elaborate techniques”, obviously.

Oliver

Is it really an issue of “over-screening”? Or is it not rather an issue of the currently available screening techniques not giving us answers that are precise and differentiated enough? On the other hand, how are we going to get there if not step by step? Just a short while ago, routine hematology analyzers were giving us just the basics on the numbers, and even now, 3-part-DIFF analyzers still abound in smaller-scale settings. But the most advanced instruments give us already relatively detailed information on the state of hematopoesis, granulopoesis and thrombopoesis that only recently would have required elaborate results. Today, these result come as almost a “side product” of the CBC, without much of an added effort. This doesn’t come out of the blue, but out of step-by-step progress in the development of the techniques.

http://www.nursingcomments.com Stephanie Jewett, RN, MBA

Good article – I happen to think she does have a right to know, even if found by accident. If I were in her shoes, I would rather know something of this magnitude. What to do about it? That is the ultimate question. Stephanie

AnnR

I seems like an example of how portable universally accessible medical records could reduce waste. Did the prior clinic just ignore the mass because they were shoddy operators or did they have a legitimate reason?

How much re-inventing of the wheel went on here?

MarylandMD

Nice vignette demonstrating the difficulties of managing a mass.

The US healthcare system is being overburdened by 2 fallacies: “If some screening is good, more screening must be better.” and “You can never have too much information.” Many patients and physicians are being misguided by both.

At times our culture worships technology and information at the expense of good sense. We need to talk more about the destructive side of this.

Oliver

@MarylandMD
“good sense” all too often isn’t. Human perception is easily fooled, including into believing that “tried and true” techniques are more than just the jury-rigging a way to do something at the time they were invented. Mankind is very visually oriented and focussed on personal experience and tends to overlook that anecdotes aren’t evidence. Good common sense quite often is little more than a euphemism for one’s own prejudice. Take a look at the “Gorillas in our midst” experiment or the infamous “white van” in the Washington sniper case and it is painfully obvious how easily we fool ourselves. Add to that the problems arising when one feels rushed and in a hurry, let alone being at the end of a 24h (or longer!) shift, and “good sense” sounds more like a threat than good patient care.

MarylandMD

I didn’t use the specific words “good common sense”. You are right that human perception is easily fooled, and it can be fooled by technology as well. I was making the point that we tend to run tests before we think. You are right that both patients and physicians can fall victim to flawed thinking. But to draw the conclusion that more testing and more information is a remedy to our already flawed thinking is just foolish. Overtesting is a real threat to good patient care.

Oliver

What is foolish is an exaggerated sense of one’s own capabilities. There is no greater threat to good patient care as a doctor believing “I can handle this” when clearly, he or she cannot. Plenty of patients have to pay the price when, for example, a doctor thinks he can handle their stroke when they should have been delivered to the nearest stroke unit posthaste.

Testing, especially automated testing, removes a layer of subjectivity by always applying the same standards. Even where it’s wrong, it’s wrong the same way every time. But testing can also achieve accuracies that a person is patently unfit to achieve for logistical/statistical reasons. Perception isn’t fooled by technology when it comes to testing, it is fooled by a lack of knowledge of the concepts and technology underlying the test. But when a surgeon doesn’t know which is the business side of a scalpel, we’re likewise in trouble. Obviously, people need to be aware of the way the tools they use work. If they don’t, that’s hardly the fault of the tools. If you use a hammer for a screw, is it the fault of the hammer that it doesn’t work really well or the fault of your not using a screwdriver?

Good patient care is based on solid information on what, if anything, is wrong with the patient, and what, if anything, can be done to correct the situation. Hunches and tasseography might make for a good TV series, but frankly, I’d loathe to entrust my health to such a lottery.